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Cancer Treatment in a Pandemic

I am about to start week 3 of the first cycle of my cancer treatment.  I am receiving immunotherapy, which is basically the same as chemotherapy except that for chemo you are bombarded with a treatment which is not targeted and destroys good and bad cells, whereas immunotherapy is more targeted, acting on the specific t- and b-cells which are causing my particular form of leukaemia.  Think more laser-sighted rifle than machine gun.  Think also that most of my blood consists of bad cells.  I am quite the internal battleground.

image description – a photograph of the author who has short red bobbed hair and is wearing a green t-shirt with cartoon images of female action heroes.  They are sitting in a hospital chair holding their left arm in front of them.  The forearm has a port inserted into the skin through which IV drugs can be transfused.

My treatment a complicated regime involving two different drugs, one infused through IV and one in tablet form.  The IV is for six months (cycles 1 to 6 inclusive) and the medication is for a year (end of cycle 1 to cycle 12 inclusive).  It involves up to six trips to and from the hospital in the first month, down to two a week from the third cycle; I have a calendar and am still confused.  After the 12th cycle ends it is hoped my leukaemia will have improved to the point that I will once again enter the active monitoring (watch and wait) phase.  My cancer does not go into remission, it just resets and starts its journey again.

Treatment is made more dangerous for me, and more difficult to navigate, because of Covid.  More specifically, because of the confusing, selfish messaging that the United Kingdom has been given, together with the idea that somehow personal freedom to be all about oneself is more important than acknowledging and supporting the fact we live in communities and affect many people every day in our interactions, however small they may be.

Yesterday the UK government announced it is shortly going to be relaxing the rules that it had not been enforcing anyway, and it was hoped everything would be returning to “normal”.  This new Step 4 regime starts on 19th July 2021 as England moves out of lockdown.  However, as the document itself says, the final decision will be made on 12th July 2021, so that could all change again.  The devolved governments of Scotland, Northern Ireland and Wales will have their own procedures for dealing with the pandemic.

Consistent, clear, updating advice.  It must be nice to have a government that provides that… *side-eyes New Zealand*.  I strongly recommend you read the link to what will be expected of you, as it is now all down to personal responsibility and everyone caring about the other people with whom you share an environment.

Image of a medication pot split into seven separate days, further split into morning, afternoon and evening sections.  The pots are seven different colours, being left to right pink, orange, yellow, cream, blue, turquoise and purple.  The days of the week are listed above, and the weeks are also numbered.

At present I have absolutely no immune system whatsoever.  Nix, nada, zero, zip, zilch, nothing.  I have a mune system, being the exact inverse opposite of im.  I am literally an ex-vaxxer because it worked for two weeks and now treatment has removed all trace of antibody protection.  I’ve levelled up on medication pots and have yet to be prescribed the tablet section of my treatment.

I’ve come to terms with the fact I will be shielding indefinitely yet it is still possible I may be out mid-2022.  Who knows?  I am vulnerable to every infection now, and highly susceptible to sepsis should I get an infection.  The pandemic simply makes it easier for me to decide to stay inside.  It’s not really a choice, as I want to live.  If I didn’t, I wouldn’t be having my cancer treatment.  Unfortunately because I do want to live I have to spend a considerable time just existing.

Will society suddenly realise that it is not quite ready to ditch the masks?  That distancing is quite a good idea really?  That the NHS needs help so the fewer the infections, the better the healthcare system?  That their neighbour who they have never spoke too might still carry covid or become ill, and it only takes one cough/sneeze/touch-contact to hurt a vulnerable person?  That the children are being released into normality just before the school summer holidays so parents are likely to be stuck at home with potential biohazards running around the place?

At this point it doesn’t really matter if society does a complete 180 and starts taking it seriously; the fact is I can’t trust people to do so.  Like with any prejudice, because it is a prejudice to presume that those with disabilities/conditions should be treated differently/hidden away/excluded from access to living with self-determination, I don’t know who the person is who will hurt me until I have been hurt.

I am living through a pandemic and I am living through treatment for cancer.  Next year I plan on living just for me.  On the plus side, I have a treatment room with a view.

The view from my treatment chair being three windows, each with two panes of glass.  There are tall trees of all shapes and shades of green visible in the lower windows, and a bright blue sky filled with clouds visible in the upper windows.  Inside the room up against the windows are three metal trolleys on top of which are, from left to right, a small plastic cup with a jug of water, unknown medical machine, empty.

CLL – Countdown to Treatment Has Begun

I’ve informed all the family and friends I could get hold of so now it’s time to blog (which they have all be notified I will be doing the heck out of for the foreseeable so are prewarned).  It’s time to let both my readers know (presumptuous to assume they are not already informed via the above, I know).

My cancer (CLL) has reached the point where it has to be treated.  I’ve more symptoms and my blood counts are not going in the right way nor at the right speed.  So, on Wednesday 23rd June in this Our Second Year of the Pandemic (or 2021 if you prefer) I will be commencing a 12-month course of treatment which, by the end of it, should have all my blood counts back to near-normal and other symptoms disappeared.

The initial appointment is on 16th June (five days from writing this) at which all the consents will be signed and timings worked out, ready for the actual treatment to start on the aforementioned date.  I will be having a treatment known as Venetoclax + Obinutuzumab. I have yet to be able to pronounce the last one properly until the third attempt at trying.

Neither of these drugs are a form of chemotherapy, instead they are an immunotherapy.  However, in the way may treatment will be dispensed and in terms of potential side effects, it is pretty much the same thing.  As far as I can tell, the only difference is that the drugs I will be on are more targeted to specific cells whereas chemo is more of an untargeted treatment.  At present I am ignoring whatever potential side effects I might have, as I cannot know in advance what I will get so I am concentrating on what I do know will happen, not what might.

My first treatment day will involve a blood test at 8am, then four hours on an IV drip having Obinutuzumab transfused into me, then another blood test and hopefully home, unless signs indicate that I should be admitted overnight.  For the first week (cycle 1 is the first to fourth week, then cycle 2 all the way to cycle 12) I will get a transfusion the next day as well.

Weeks two and three, once a week infusion, with the possibility of an overnight hospital stay for each, won’t know until it happens. I’m assuming it won’t. I have been warned it will be intensely boring; thank goodness for e-books.

Week four, onto the Venetoclax which is an oral tablet medication given at an initially low milligram dosage and is then slowly raised over the next four weeks to a clinical dose.  This dose will then be a taken every day at the same time for a year.

In the meantime I will be having Obinutuzumab once a month from week five until week 26.  After that the Obinutuzumab will stop and I will be on Venetoclax without Obinutuzumab for the next 26 weeks.

Confused?  Now factor in blood tests once a week on different days to the treatment days, as well as on the treatment days, every week for a year.  It was a really daunting schedule to hear about and it didn’t really sink in at the last meeting with my consultant.  For the first month I may be going to hospital six times a week, two or three times in one day.

Luckily the hospital sent a full list of treatment days which I have now gone through and entered the exact dates upon.  Also, I highlighted hospital dates in yellow.  I may decorate it, I don’t know.   It’s going to run my life for a year, so I feel I should do something special with the seven pages of typed instructions!

I am also so lucky to have a partner whose workplace is incredibly supportive and who are doing their best to ensure Sooterkin™ can drive me to and from the hospital, and a wonderful friend Plaster™ who has offered their services when Sooterkin can’t make it.  There is hospital transport, MacMillan specialist counselling, nursing support, and aid with finances; there is so much out there that I will be accessing to help me and my support network get through these next few months.  I remain furloughed from work until the scheme ends in September, and as I cannot work from home (which is a whole other saga) I’m not sure what happens after that.  I’m concentrating on July and August before I get to September, so that can wait a bit.

It is one heck of a commitment treatment-wise, is the most intrusive, and demands the most initial time commitment for any first-line treatment that is offered for CLL.  It is very effective and will get me back to normal-as-I-ever-was, but still living with CLL.

CLL is incurable and we never enter a remission which may lead to an all-clear.  We only ever get our conditions back down to active monitoring (which is watch and wait, i.e. regular blood tests to see how you are going and check-ups with the specialist).  The important thing is that we can recover to a point where normal lives can be resumed and the merry-go-round begins again.

Unfortunately, because this is Our Second Year of the Pandemic, living with CLL has changed.  It is an immunity-squishing form of blood cancer and we remain clinically extremely vulnerable.  It’s why my treatment was put off since my bone marrow aspiration/biopsy and CT scan in January 2020, which thankfully is not being redone.  My worsening condition is why treatment is happening now.  I have to remain in shielding, even stricter than I have been, until at least January 2022.  It’s hard to know, probably longer, but it all depends on factors outside my control and in whom I do not have much faith (*coughUKGovernmentcough*) so there is no point in worrying about it yet.  Just like those potential side effects that I might or might not have.

Here is what I do know:

  1. I’m starting treatment on 23rd June 2021.
  2. It’s time-consuming and I have the calendar to prove it!
  3. This time next year we’ll be millionnaires Rodders I’ll be in much better health.

That’s all I really need to know, for now.  I’ll let what happens, happen and deal with it then.

Image description: close up of a hamster smiling with two thumbs up, with the words “practicing positive thinking” in white capital letters over the top and bottom of the image.

CLL – What is “A Normal Life” Anyway?

Wikipedia: the first case relating to the ongoing COVID-19 pandemic in London, England, was confirmed on 12 February 2020 in a woman who had recently arrived from China. By mid-March, there had been almost 500 confirmed cases in the city, and 23 deaths; a month later, the number of deaths had topped 4,000.

UK – 20th May 2021: there have been 4,452,527 diagnoses and 127,694 people have died. 20,870,453 have received both vaccination doses.  It is not known how well the vaccines are performing yet.

It’s 21st May, 433 (inclusive) days since I started shielding and there is no end in sight based on one simple reason – I have blood cancer.  Mine is a chronic (meaning with me for life) rather than acute (meaning needing immediate treatment) form of blood cancer and will be with me until I die.  Indeed I may not die from the cancer (no-one knows nor can predict that); most CLL patients are diagnosed in their late 60s, I was 42.  Some people are younger than that.  Some live short lives, some 30 years plus. Chronic Lymphocytic Leukaemia is diagnosed with the words “this is the cancer you will live with, not die from” issuing from the specialists’ mouths.  My first consultant told me that I would live for up to ten years.  I have a different consultant now but hearing a potential 10-year life span as the average life span at the age of 42 is terrifying.  I learned not to read the statistics on CLL after a while.

Times have changed.  From being a cancer that you took calculated risks which were reasonably minimal with regard to ordinary infections, CLL has become one of the most dangerous to be living with in these pandemic times.  CLL means I have a very compromised immune system.

This is how I lived with CLL pre-pandemic:

  • regular blood tests followed by scheduled visits to the Specialist at hospital,
  • getting the annual flu jab and five-yearly pneumonia jab,
  • contacting the specialist/GP upon feeling unwell in any way,
  • regularly taking my temperature,
  • checking lymph node size and shape,
  • three hospitalisations so far, all with chest infections,
  • awareness of hygiene knowing any infection through any type of cut could rapidly develop into sepsis,
  • avoiding children who have been recently vaccinated with any ‘live’ virus (most of them are ‘live’ viruses-see image) for at least two weeks (no covid vaccine is ‘live’),
  • avoiding anyone who is ill or thinks they might be,
  • monitoring for other symptoms such as drenching night sweats, bone pain and fatigue,
  • maintaining awareness of those around me at all times,
  • I had to quit swimming (I was a 3-mile-a-weeker just a decade ago) as it gave me chest infections (see above).
image text: 1. Headline says Live, attenuated vaccines.  Body of text says live, attenuated vaccines contain a version of the living microbe that has been weakened in the lab so it can’t cause disease.  Because a live, attenuated vaccine is the closest thing to a natural infection, these vaccines are good “teachers” of the immune system.  Example: vaccines against measles, mumps and chickenpox.

I’ve also been told I am in imminent need of treatment since October 2019, but the pandemic meant many treatments were delayed and mine in particular as it was more dangerous for me in the hospital than to receive treatment for my cancer.  Visiting the hospital for consultations is too dangerous so being treated was and still is more so.  The vast majority of people with CLL have not been able to have meetings with their consultants face-to-face to monitor their conditions for over a year.

At every appointment for 18 months I have been told over the phone that treatment will be put it off a bit more as it still isn’t safe yet.  It’s 16 months since I had the preparatory bone marrow biopsy and aspiration and the CT scans on my lymph nodes and enlarged spleen.  Thankfully, staying shielding means I am not exposed to the everyday infections that most people wouldn’t even notice as their immune systems work.  Shielding has helped me postpone the treatment and maintain a level of health that without the pandemic I would not have had.  The irony is very much not lost on me.

My ongoing normal is to stay away from people.  I live in a city, so that means shielding, with any venture outside being an internal discussion weighing up risks to physical health against the benefit to mental health.  The risks, of course, keep changing.  We now have another variant, apparently even more dangerous than the previous variants.  Lockdown has ended but yet another wave is expected.  I’m safest indoors.

I’ve seen my parents once, because they shielded for days before I visited.  I’ve seen friends at a distance, because they take covid-19 tests before they see me.  I have very occasionally allowed risk to enter my home, prioritising my mental health and friends over my physical health and life.  I don’t see any friends that have children or are around children, or that aren’t tested, or that I have to travel to see, because I cannot guarantee they are safe for me to meet.  I have to rely on what people are telling me about their own days and the risks they may have taken in order to make choices about interacting that could, if I’m wrong, lead to infection and potential long-covid problems or death.

I’ve unshielded occasionally for the sake of my mental health.  Each time is a risk-assessment and trust exercise.  Shielding is strongly advised by government but is voluntary, and support for workers furloughed ends in September.  The pressures on me to unshield are immense, internally and externally.  I’m having to pay attention to statistics again.  My CLL is no longer one to live with, it is one that is preventing me from living in the way I used to.  My activism, volunteering, work, and social lives are now only available through a laptop screen.  I am privileged however to be able to shield; I have a supportive workplace, and supportive partner, family and friends.  I don’t live alone.

The reason I do not see an end to needing to shield is because, for me, nothing is changing.  COVID-19 is still around, there is another new variant, and the known risks have remained the same or worsened for people like me.  I used to think I wasn’t rare, that if I had this combination of conditions and pandemic and environmental risk, then so must many others.  I’ve come to realise I am the only person I actually know of still in the position of having to shield.  I’m a bit more original than I realised. CLL has changed my life in a way not even the specialists could see coming.  Living with CLL has been redefined and what constitutes my life has changed profoundly.  My new normal is very different to anyone else I know.  It’s a lonely position to be in, but thanks to friends and family and the world wide web (all hail Sir Tim Berners-Lee) at least I’m not alone.

Have some statistics as of 20th May 2021, all part of evaluating my position and constantly updating:

Cases in [the borough in which I live] – source: https://coronavirus.data.gov.uk

1 confirmed case is someone who has tested positive for coronavirus.

8 new people had a confirmed positive test result reported on 19 May 2021.

Between 13 May 2021 and 19 May 2021, 61 people had a confirmed positive test result. This shows an increase of 48.8% compared to the previous 7 days.

Vaccinations in [my borough]

Vaccines are currently given in 2 doses, at least 21 days apart.

121,772 people had been given a first dose by the end of 18 May 2021.

61,251 people had been given a second dose by the end of 18 May 2021.

Healthcare in (my local) NHS Trust

Some people with coronavirus have to go into hospital.

0 people with coronavirus went into hospital on 9 May 2021.

Between 3 May 2021 and 9 May 2021, 6 went into hospital with coronavirus. This shows an increase of 200.0% compared to the previous 7 days.

There were 4 patients in hospital with coronavirus on 11 May 2021.

Statistics for clinically extremely vulnerable (CEV – that’s me) people will be released by the ONS (Office of National Statistics) on 8th June 2021. This is all they can say at present:
Clinically extremely vulnerablePeople who are identified as clinically extremely vulnerable (CEV) are at very high risk of severe illness from the coronavirus (COVID-19). Up to 16 February 2021, CEV people were identified either because of a pre-existing condition or based on the clinical judgement of their clinician or GP that they are at higher risk of serious illness if they catch COVID-19. From 16 February 2021, individuals can still be identified as CEV by these routes, but also by COVID-19 population risk assessment.

The most up-to-date but very small study from the United States (Sloan Kettering: Dr. Anthony Amato, et al, pub. 13 May 2021) – bold highlight by me:
“In this study, we found that only half of vaccinated patients with CLL develop detectable anti-SARS-CoV-2 S1/S2 antibodies. Furthermore, we found a significant difference between rates of detectable anti-SARS-CoV-2 S1/S2 antibodies between treatment-naïve patients (17/18, 94%) and those who had received CLL directed therapy (6/26, 23%). These striking findings suggest that vaccination in patients with CLL may not confer the efficacy that we expect in the general population, particularly in patients receiving CLL-directed therapy. … specific guidance for patients with CLL are warranted as the current Center for Disease Control and Prevention recommendations regarding relaxed personal protective equipment use when around other vaccinated people may not apply to this population [24]. Without consistent antibody responses, patients with CLL should continue to exercise extreme caution following vaccination until further data on clinical efficacy are available.”

boonchai wedmakawand/Getty Images.
Image description: A close-up of a microscope, with a blood sample being placed by a pipette onto a glass slide below the lens by a hand in a blue latex glove.  The glass slide is anchored by two metal straight-edged grips.

Bye Bye Bike – The Dream is Over

Was it really only last August when I, in my already failing desire to get back to work amidst the sound and fury of whatever was happening on the outside because I had been shielding for seven months by then, bought this absolute beauty of a three-wheeled motorbike?

This pandemic means it is no longer safe for me to use public transport, because of my CLL I have to commute to work and it took two buses, or one bus and a train, to get there.  Alternate travel arrangements were required, and at the time although I was expecting the second lockdown I still wanted to plan for a possible return.  I sought a three-wheeler for extra stability as bouts of chronic pain are not predictable.  I spent many hours researching reviews, website reviews, gathering information and had actually looked at this type of bike six years earlier when the idea first came up.  I bought the Piaggio MP3 as it can be driven on a car licence, which I already had.  However, when it was delivered looking a bit different than the photo (actually an upgrade for the same price) I took one look at it and knew I needed bike lessons.  This gorgeous bike is to be ridden, not driven.

Silver piaggio MP3 bike with two front wheels.  The author standing next to it on the right side, wearing a black padded leather jacket and a black bike helmet with the visor up so my glasses are visible.
my and my bike, at time of writing…

I booked a class that stated it was for beginners and was run by professionals.  It certainly was the latter, but not the former.  We had an hour of road safety and were expected to be riding on the roads by lunchtime.  This was not indicated when I booked the lesson nor was it in the information online about the class.  It may have been set as I was the only beginner there, all the others were retaking their CBT.  It was clear when I walked in they weren’t happy a total noob was there (only woman too, as although I identify as gender fluid, this is not how I am perceived).  I was intimidated, nervous, and being repeatedly told that the use of the handlebars is intuitive.  After a brief “how to turn the bike on”, how to brake and how to turn (apparently, this will be intuitive too, just turn from the waist).  Guess what, neither was intuitive and I was unable to turn the tight circle they had laid out after 20 metres of straight track, and I crashed into the metal fence at 90 degrees, coming off the bike with my left leg under it and ripping the engine off the front of the bike.  Thank goodness I was very slow.

Sky blue three wheeler motorboke with large headlights and a rounded plastic windscreen visible.
not my bike, but same make and model.

This was two hours into the day long lesson.  I was shaking and tearing up, and feeling the onset of great pain, and I felt humiliated. I was told by the course leader to go learn to ride a bicycle first before I came back.

I fully intended to book another course with another provider recommended to me by my friend Worksub (who will know why I’ve called her that but I don’t think she is one of my two readers).  I was not going to let that terrible experience stop me learning.  I’d always wanted to ride a bike, but when my Clone™ was learning at 18, I had only been seizure-free for six months, so by the time I could legally learn to drive I was already living in the Big Smoke away from home at Uni.  I didn’t learn to drive until I was in my 30s and that’s only because family keep moving far away from me (hmmm…).

But time moved on and winter came, which showed me very clearly how my body reacts to the cold and that the idea that I, a person with chronic fatigue, chronic pain, and immunosuppression combined, would be taking an unnecessary and unwise risk to ride a bike through London traffic even for just the three mile each way commute.  I cannot lift the bike if it falls.  I struggle to get it off the kickstand.  The weight of the safety gear I have is significant and could easily trigger pain.  I have to look at these potential problems and work out if there could be a balance or method put in place to enable safe riding.  I would not have know about these specifics if I had not bought the bike, all the safety gear and bike security, and tried a lesson.

This has been a very hard decision to come to, partly because it was a significant expense for which I received a lot of generous help, but mostly because I have always wanted a bike.  My Twinnie™ (aka Clone™) had one, my dad had one, my mum used to steal Clone’s so dad could teach her how to ride), I have friends who love the freedom that a bike or scooter can give them.  It would have given me freedom too, to leave my flat safely during this pandemic, and all the positive thinking and therapeutical practices are not going to stop the feeling that I’ve been inside for fourteen months and it is going to be many more months before I can be truly comfortable in situations where I may even just pass a stranger walking down the street.  Even longer if they aren’t wearing a mask.

A picture of the author wearing a brightly coloured half face-mask with the words "sometimes you have to let dreams go to move onto the next one" written in bold white capital letters imposed on top of the photo.

I have to put the safety of myself and other road users first.  The bike must go and I shall then need to get a small, city-suitable car.  My environmental head is screaming at me, but that is the ableist in me shouting (I’m ingrained with it as much as anyone, despite my disabilities/conditions).  I never wanted to be a two-car household, but m’Sooterkin™ also has to drive as he works in the middle of nowhere.  I cannot for the sake of my health use public transport, I cannot because of my health safely ride a bicycle.  I’m left with the choice of never returning to my job or getting a car.  I’m going to take the purchase decision very slowly this time; I know I am in shielding for at least another two months.  On the plus side, I can already drive whatever I finally get!

The biker dream is not going to happen.  It’s another dream that needs to be laid to rest.  Sometimes dreams are outgrown and all the trying in the world simply isn’t going to work.  I know I’ve made the right decision and I’m choosing to believe that just means the right dream will find me another way.  Or maybe the dream is just being able to get back to work, however I manage to do it.

Shielding-10 months inside

I have now been shielding for ten months and one week.  Not that I’m counting of course*cough315dayscough*, nor am I having to tick days off on a calendar just so I know what the day and date is. My hair is getting a life of its own, and I’m considering contacting Hagrid for a DNA test. I have dip-dyed hair colouring completely by accident.  I don’t have to think about how I present to anyone and that’s very relaxing.

For the last month or so I have been feeling quite positive about my shielding experience.  It is important to me to try and find the positives, to boost my mental health.  So, as a lover of a good list, I made one.  A list that is, I make no value judgement about its goodness:

  1. My CLL has improved.
  2. My pain levels are easier to manage.
  3. I can plan my life much better as there is little to plan.
  4. I am not letting anyone down by cancelling arrangements last minute.
  5. I don’t have to reject invites as I’m not allowed to accept any.
  6. I’ve benefitted and been humbled by so much kindness towards me.
  7. I’ve seen online shows and comedy I would not otherwise have been able to see.
  8. I’ve not had to worry about accessibility at all (for my osteoarthritis ).
  9. Despite not liking phone calls, I’ve made more than ever before, just to keep in touch.
  10. Introspection has led to positive breakthroughs for me.

That last one has had a profound effect on my mental health in a very beneficial way, see this blog.

The first one on that list was the biggest surprise.  I have chronic lymphocytic leukaemia , and since October 2019 I have been told that my condition was very close to needing treatment to reduce lymph nodes and spleen swelling, reduce the white blood cell count and raise the haemoglobin.  However, in January 2020 a new virus was starting to become known, and by 15th March I was in shielding.  At that point my white blood cell count was 293.  I was referred to a trial ending at the end of 2020 in the hopes that my treatment would be one of the new drugs being tested; there were already many positive results available for review by medical specialists in utilising the treatment. 

At my first appointment in September it was made clear to me that my suspicions had been correct and the treatment was in part to be delayed because of the pandemic.  Partly the overloaded NHS cannot cope, and partly because of the holistic view of my condition and my being shielding. It was clear by September that the pandemic was into a second phase (third now…) and there was a lot more for a specialist to consider deciding to go ahead with treating me.  At this point I had taken myself into psychotherapy as I was not coping with the situation I was in.

By November 2020 my white blood cell count was 209 and all other counts had stabilised.  The only thing that is different about my environment is that it is currently limited to being indoors at home.  I assume the fact I am not being exposed to the everyday germs and pollutants that living in a city brings is the reason why, and in conversation with my specialists, so do they.  I am not cured, but it means that my treatment can safely be delayed.  The trial I was referred to has finished, but there may be a new one in November utilising a newer treatment which has fantastic results for my particular presentation of CLL.  In case you are wondering how I know that, it’s because the US already has all these drugs available in its private healthcare system, and the EU has fantastic results from their tests too.  We now have to do our own tests as we are not part of the EU so cannot licence those drugs without undergoing our own stringent testing too.  However, we can know what the results are likely to be.

With CLL, it is the case that the longer treatment can be delayed, the better.  It is a chronic condition so I can never be cured or go into remission as the term is understood with acute cancers.  My condition can improve to the point it is almost undetectable, but I will always require constant monitoring.  Most importantly, once you have undergone a treatment protocol, you cannot repeat it.  The more types of treatment, the better.  As I am considered very young to have been diagnosed with the condition (average age is in over 60s and I was 42, most diagnosed are AMAB (assigned male at birth) and I’m AFAB (assigned female at birth), there is a possibility that if I am treated too soon I may run out of forms of treatment to have.  On the other hand, I may not.  I’d rather play the long game and put off the treatment as long as I can!

Shielding has saved my life simply by protecting me from the covid virus.  It may also be saving my life by helping my body deal with my leukaemia and delaying my need for treatment.  Who knew that 10 months inside and counting would be such a positive thing for me?!

I am Gender Fluid

I keep writing blogs about this topic and not publishing or deleting once published, for what I like to think of as a variety of reasons, but ultimately it’s just one.  Fear.  I made very tentative steps early in the pandemic which resulted in a  loss of friends, although it blew up so quickly I didn’t get a chance to define “gender struggles” and they don’t know the true impact of their words.  I am sure if they ever read this blog it would be a shock to them.

You cannot tell gender from a person’s presentation
[image description – photo of a crowd of people of all shapes, abilities and sizes, all silhouettes ]
[image description: a picture of an umbrella labelled “transgender” with block text sections describing the gender identities included and excluded – full glossary in a link at the end of the blog]

Then there is also my personal experience of advocating for my friends under transgender umbrella (which is inclusive of non-binary, gender fluid, non-conforming, agender and many more identities).  It has met with prejudice and ignorance from people I know to be loving.  My fear of rejection grew.  I could fight for others but could not even recognise let alone fight for myself.

I was also fighting my own ingrained transphobia, which we all carry with us, no matter who we are.  I thought transition might be necessary, until I read further and experienced testimonials from others that I realised it was about my own identity, not the identity which is imposed on me.

[image description: left-author Alice Wong who is Asian-American and has short black hair, is wearing a blue multi-coloured shirt and has an oxygen mask on. Right: cover image of the book Disability Visibility: First Person Stories from the 21st Century]

It was only when I read the wonderful book “Disability Visibility” curated by Alice Wong that the thunderbolt hit me and my truth was confirmed to me.  I stopped doubting myself; I have had dysphoria for years since developing epilepsy age 12 almost to the day that I also started puberty.  The two were entwined from the outset, and as I have got older I have had more diagnoses of different conditions which create a disabling effect with regard to enabling me to engage fully in society.  That’s the difference, as far as I am concerned.  Some are disabled by society, some are enabled.  There is no abled.

I have always identified myself as cisgender as I am AFAB (assigned female at birth) and I assumed the entirety of my body dysmorphia was due to my myriad chronic and disabling conditions.  However, looking back, I see my history.  I first identified as gender non-conforming on Facebook about seven years ago but changed it back not long after as I did not want to be seen as appropriating a term; I was still confused. I joined groups, I researched, I’ve been an intersectional feminist for as long as I have been an activist, so I did this at first as an attempt to be an ally.  The more I understood the more I enlightened myself and the more I realised that, actually, this is me.  My cisgender identity was something I thought I was because I didn’t know myself well enough yet.

When I admitted that truth to myself all I felt was a tremendous sense of relief.  A burden of performative womanhood was lifted, a burden I didn’t even realise I was carrying.  I held up so many barriers to my true self – it’s my disabling/chronic conditions, it’s my shame of self, it’s my rejection of my body, I’m too old, I’m appropriating, I’m an identical twin, I’ve spent years fighting to be accepted as a woman on equal terms (despite never believing in the gender binary), I’m a tomboy, I just prefer trousers, and even then I was still conforming to the gender role I believed I inhabited.

Through joining groups and talking to people I’ve learned my experience is not uncommon.  So many older people are struggling with this, with the years of indoctrination which hid their identity from themselves. 

So now I do know, I am gender fluid.  Sometimes I feel masculine, sometimes feminine.  Sometimes I am not a woman, but I am not a man.  I am AFAB but I am not cisgender.  I’ve lived nearly half (hopefully) of my life performing a role so strongly that I didn’t even realise I was doing it.

This is not something I come to lightly.  It has been years in the realisation.  I’ve been wanting to open up for many months and have not felt able to, but now feels the right time.  All that changes is my own identity, and my pronouns are now she/they.  I would prefer they (for everyone) but am okay with she, as it is a big change for all who know me.  This is not about how I am defined by others, which let to my cisgender definition.  This is about how I define myself.  I am gender fluid, I am she/they, and I am still the same person you have always known.

To all my readers (both of you) please be kind if commenting; this blog has been a long time coming. Years, in hindsight.  I am still fearful but I am finally living my truth and that feels very good.  This is me.  I know it, and that is really all that matters.

More information:

UK

Home

https://genderkit.org.uk/organisations/

https://www.beaumontsociety.org.uk/transgender-organisations.html

https://www.nhs.uk/live-well/healthy-body/how-to-find-an-nhs-gender-identity-clinic/

USA

https://transstudent.org/

https://www.glaad.org/transgender/resources

Global

https://globalresourcesreport.org/

https://www.verywellmind.com/best-online-transgender-support-groups-4800840

Glossary of Gender and Sexuality terminology:

http://thepbhscloset.weebly.com/a-list-of-genders–sexualities-and-their-definitions.html

To Treat or Not to Treat – My CLL

Image description: orange cartoon figure sat slumped on a box surrounded by question marks

The nature of Chronic Lymphocytic Leukaemia is that it is a build-up of varying symptoms which eventually lead to a form of treatment, whereafter ideally one’s bloods and symptoms return to close to normal and then the whole roller-coaster starts again.  The term remission is used for this period, but unlike other cancers, this remission will never lead to being cured.  All it does is start the “active monitoring” AKA Watch & Wait, Active Surveillance or Watchful Waiting) phase again. I have been told for 11 months that treatment was imminent.

I have been referred to another Specialist who is running the new trials for upcoming forms of treatment, who I had been informed would determine which form of treatment I would be put on.  After a year of “imminent” the surety was welcome and I was looking forward to the appointment.

After the meeting with the Specialist, having 12 test tubes of blood taken (I said they could have six extra to store in the tissue bank for medical testing/experimentation in order to help uncover future forms of treatment), and having sat around for two hours which did not do any favours for my chronic pain, I left the hospital.  I promptly burst into panicked and heaving tears in the car ride home.  My new Specialist, who was Registrar under my former Specialist, has now stated that he may not put me forward for treatment yet.  It’s all up in the air again. 

You may be reading this thinking, hang on a minute, she doesn’t need chemo straight away, what’s so bad about that? That is good news, surely?  I understand that reaction, it is what my employers said to me.  But that response doesn’t comprehend the mental preparation it takes to accept chemotherapy will be required and the fear of an uncertain future that cannot be planned when there is no firm course of treatment in place and the advice keeps changing from one hospital visit to the next.

Imagine you have been told that you will be needing chemotherapy, imminently, for 11 months.  Imagine a pandemic happened which put your chemotherapy treatment off, not because it wasn’t needed but because it was too dangerous to give during the pandemic.  Now imagine that after 11 months this advice is turned on its head and you are told that said treatment is required but that it will be delayed.  Not yet, the Specialist says.  Not yet, we must do more testing, you are young, and we don’t want you to start treatment if we can at all in any way delay it.  Imagine the confusion this causes.  Imagine never being able to plan more than the next appointment, four weeks, ahead.  Imagine being told this whilst the pandemic is again worsening and we head towards winter, with its increase in colds, influenza and other transmittable diseases.  Imagine knowing from experience how vulnerable you are to such things, and not knowing if you can get your usual vaccinations because you don’t know what or when chemotherapy may be advised.  Imagine feeling the only safe space is shielded in your house, potentially for years.  It’s been seven months already.

One of the side effects of my shifting situation and changing medical advice is that I am left feeling like everyone I have spoken to about my condition and the situation will see me as a liar.  I’ve been told in the past that I exaggerate, make things up, must be wrong about my own experience, am attention-seeking, it is not the way people understand cancer to be so it must be untrue.  I had the same thing happen when I talked about the side effects of medication I am on.  I generally only write the absolute truth in my blog and am very reluctant to open up in person.  People may think they know, but only m’Sooterkin™, parents and twin sister really do.  Not only do I not feel I will be believed but I also don’t want to burden them. My mental health is constantly in flux. The conflicting advice I have received is from two Specialists who are both highly regarded in the field.  One trained the other, and the other is a leading figure in research into the condition.  I left that appointment fearful.  I left knowing that I would be shielding until there is a vaccine for the coronavirus that has been taken up by most people in England, and until the pandemic is firmly under control.  I left understanding the only reason I would be given treatment would be if the risk of death from CLL was worse than the risk of death from exposure to the virus.

Most people diagnosed with CLL are over 60.

There are a limited number of treatments that can be used with CLL and if you have been treated with one once you cannot be treated with the same treatment again.  I was diagnosed at age 42.  There is a possibility that if I start treatment now, I will run out of forms of treatment, although it’s hard to know as who knows how long I would return to watch and wait for after the first, second, third or fourth treatment.  CLL is incurable, you can go into remission, but you will never be free of it.  The leukaemia will be present for the rest of however long my life turns out to be.

I need to keep my employer updated even though I am working at home on reduced hours.  I needed to adjust my thinking after this appointment, just to be able to cope with this constant state of unknowing and to try and convey that to those who are supporting me in this.  I stopped thinking about treatment being “put off” or “delayed” and am trying to think of it as “pushing back” day by day, week by week, as long as possible until the Specialist decides it cannot be pushed back further.  I am being monitored every four weeks.

When one has a chronic condition one is never cured, just maintained.  We are fed the line that medical conditions and treatments are linear and chronological.  We are diagnosed, we are assessed and treated, we are cured/in remission/dead.  In reality that is not the experience of a person with a chronic condition, and it is so difficult to get out of that mindset.  Even those of us living with chronic conditions find our minds stuck in that mentality.  The ideal of the model of an illness or condition is based on an acute experience, not chronic.  We do not learn about neither are we taught to understand a chronic condition, or dis-ability.

The experience of a chronic condition needs to be a fundamental part of our understanding of how the medical model may be applied to treating people.  Chronic conditions need to be understood in a holistic context, as they affect far more than merely the condition may suggest.  Mental health is tied directly into living with a chronic condition.  At present, the way in which society addresses chronic conditions is counterproductive.  I have lost friends who do not understand chronic and would rather label me a liar than try to understand or even give me the benefit of the doubt as someone who has lived with chronic conditions for 37 years and counting.  Thankfully, the vast majority are incredibly supportive, and even if they don’t understand they don’t judge or mistrust me.

I am left confused, hurt and triggered into my clinical depression again.  I understand why.  I know that needs to change.  In the meantime, all I can do is adjust my own way of thinking and hope others do the same.

Covid -v- Cancer

It’s Blood Cancer Awareness Month in the UK and as someone who has been living with chronic lymphocytic leukaemia (CLL) for over 6 years now, I wanted to write something positive, upbeat and hopeful to help raise awareness.  Unfortunately I’ve been struggling with what to write because I value honesty and authenticity in my writing and I’m just not feeling hopeful, upbeat or positive right now.

Covid-19 has directly impacted my CLL, both in living with the condition and with regard to receiving treatment.  I was told as long ago as October 2019 that treatment was imminent for me.  That means chemotherapy, although there are a variety of medications with which I could be treated so as yet I do not know what type of treatment I will be getting.

Such a pretty thing to be causing so much trouble… *insert joke here*

You may be thinking that it is a long time since October 2019 and surely I must have some idea of what form the treatment might take.  I would have if it had not been for those pesky kids the pandemic.

In January 2020 I had a bone marrow aspiration and biopsy (removal of bone and marrow) to see what was happening (70% CLL in the marrow).  This, together with several other symptoms worsening, meant I was scheduled to undergo the initial treatment stages in March 2020.  Guess what else happened in March 2020 (a little later than some of us would have wished and medical professionals wanted)? 

I was not aware of any of this.  I had been told I would be starting treatment “imminently” in October and have heard that word at every appointment since.  The lockdown hit, I had to go into full shielding (and I remain there six months later) and everything was put on hold.  As soon as we you all started to come out of lockdown in August I was informed by my specialist that my treatment was due to start in March and had been delayed as a direct result of the lockdown.  It was determined by a multi-disciplinary medical specialist team that it was safer for me not to have chemotherapy and stay shielding.  I’ll let you just sit there with that fact for a moment whilst considering that the pandemic is worsening again.

I had CBT/Psychotherapy during lockdown as a result of the myriad mental health issues this all put me through (and continues to put me through).  I was still attending hospital every six weeks for blood tests and review appointments, although the latter became telephone-only appointments very quickly throughout this period.  This meant physical symptoms were no longer monitored; my ever-inflating lymph glands, nodes and spleen went unfelt, and other symptoms were not weighed/measured and found wanting.

Hurrah for August during which month I am scheduled for an appointment on 9th September to start treatment – no more blood tests/bone marrow aspirations or biopsies required.  I am then referred to the FLAIR trial which has a great reputation and positive results and has only been available for three years.  It’s at a different hospital, so I wait for a referral to come through.  It arrives, and the date is 23rd September.  The letter also confirms it is a telephone-only consultation.  It’s a fortnight later than my initial specialist informed me it would be.  It’s because the Covid-19 situation is worsening again.  It’s because I am very, very vulnerable to infection.  It means my chemotherapy may be delayed yet again.

It’s nearly a year since I was told I needed treatment for my cancer.  Until I start treatment I have been told by my specialists to stay shielding.  I don’t know what is going to happen from today, but I’ve just had to call the new department to which I have been referred because they had an incorrect telephone number for me for the telephone consultation they have booked on 23rd September.  It’s a telephone consultation.  I don’t think symptoms are going to be monitored at that appointment.  My life, literally, is on hold again.

It’s very nearly a year since I was told treatment was imminent, and it remains imminent.  I am doing okay to a given value of not, but with regard to the word imminent I would like to say to my specialists…

Image Description: a still from the film The Princess Bride with the character stating: “You keep using that word.  I do not think it means what you think it means.”

Well, at least I ended on a joke.

Living As A Shielder

me behind barsAt the moment, I am advised to shield until mid-August because of my specific health condition.  Those of us who are shielders are now best advised on the way to move forward by our specialists and healthcare providers.  I will have been shielding for a total of five months by that date.  I have been able to meet with two friends so far, and only because they had not seen anyone outside their immediate household for a minimum of two weeks.

I am suffering, as are all shielders.  Some are now able to open up a bit more, because the more we know about Covid-19 the more the advice can be targeted more accurately to our specific conditions.  I am not one of those people who is able to be released.

I feel like I am imprisoned.  My depression has been exacerbated resulting in an increase in anti-depressant medication.  I now have extreme anxiety to add to this which was not a feature of my mental health before.  I have started psychotherapy/CBT dual treatment to try and deal with this new addition, which I have to pay for as there is no access in my area to NHS mental health treatment for at least two years.  My level of debt is increasing, as I am furloughed on reduced wages whilst having to meet increased costs in food and other vital expenses.

My fears are not irrational.  I look outside and see so many people walking about with no masks on, not socially distancing, and know that they are increasing the length of my imprisonment.  I know that they neither know nor care.

I am a person who tries to look on the bright side and have learned techniques to help in this through previous CBT and therapy sessions, undertaken over 15 years ago.  My practice of these techniques has been destroyed by the way in which the pandemic has been dealt with by government and by society.

There is no thought, no care, no understanding.  Our society is now one of individuals looking inward rather than a social group looking to each other to support, help and uplift.  It’s all about how one can best help oneself, with no sense of responsibility or consequence for the actions effecting others.   We are a profoundly selfish society now.

I don’t see any end to this.  I don’t see a release date.  I feel pressured to give advice to work, to family, to friends, in order that they understand my position and that of a small minority of the most vulnerable (because we are vulnerable, that is the right word to use) people.  I don’t feel truly understood though.  I cannot go outside.  I cannot enter any enclosed space.  I can’t go to parks because they are full of non-socially distancing people.  Even if they aren’t when I go there, I cannot guarantee they won’t become full and if they do, it’s too late for me.

It’s not as simple as finding somewhere that is deserted to go outside.  It has to remain deserted for the entire time I am there.  I live in the city so this means I can’t go outside.  Even driving outside of London to find somewhere has been unsuccessful, even more so since the lockdown eased, or as it seems for most people in their self-absorption, since the lockdown stopped altogether and ‘normality’ resumed.

I have to ask people before I meet them what contact they have had with people within the last two weeks and if they have had any contact at all, I can’t meet with them.  It’s not just them I have to have trust in, it’s who they may have met up with, how closely they may have stood to someone in a shop, and I trust my friends implicitly but I do not trust those I don’t know.

The pressure to ‘be normal’ is intense; I am the one who has to advise my workplace on how to make things safe for me, and I know as much as anyone else as to how this can be achieved.  I do not know yet how I will travel to work as I cannot use public transport, nor when I will return as we do not know if there will be a second wave nor how safe my area of London will be.  I may have to purchase some form of motor transport as my osteoarthritis means I cannot cycle but goodness knows how this will be achieved.  Come my next appointment in August, I may know more.  I may not.  It’s impossible to plan for.

I feel so much guilt about the situation this puts my partner in.  He has had to shield with me, although he has also had to go to the local shops for essentials.  This is the only outside he has really had, and if I were properly sticking to the rules he would not even be doing this.  I can’t subject him to that though; it’s a balance between my physical health and both his and my mental health.  This of course compounds my fears.

I am a puddle of guilt, fear, anger and (rarely) hope.  I cannot see me leaving the house before 2021 – we have the flu season coming up and this compounded with CLL means my life will be at even greater risk.  Maybe if people were still wearing masks and were practicing social distancing and mindfulness of other people I could see a ray of hope.  They aren’t, so I don’t.

That is my life as a shielder, to know so many would be fine with my death.  That is my life for the foreseeable future, to know a latte, a haircut or a pint is more important that a human life.  That is my life and it is out of my control.

HOW TO HELP SHIELDERS

Why I’ve Left the Labour Party

I have been very public about when and why I joined the Labour Party and so I feel it is only right to be public about when and why I have left.

I left last Wednesday 24th June, the day before the Rebecca Long-Bailey sacking by Keir Starmer hit the newsstands, so that had nothing to do with my decision.

I had qualms for some time but wanted to give the new leadership a chance to prove himself.  I am on the left whereas Labour is now centre-left as opposed to the socialist-leaning principles that Jeremy Corbyn (and the actual Party when it was formed) had.  Socialist is still a term used by the Labour Party when describing its formation.

Like every organisation the Labour Party contains within it systemic bigotry.  That’s not an accusation, that is a fact.  However, as a left-leaning organisation built on the idea of equality and fairness for all, it is the responsibility of the Labour Party to be transparent and proactive in fighting bigotry.  The Party is different in that all those who are paid members of the Party have a say in how the party is to be run and what the policies of the party should be.

When I joined in 2015 it was because of Jeremy Corbyn winning the leadership election, but please do not think that means I joined because of personality or fandom.  I joined because the Labour Party most represented my belief system and because I wanted a politician who was not all image and soundbites.  I joined because of what his political beliefs meant for the party that had slowly drifted so far right it was no longer distinguishable from the Liberal Democrats or the more centrist Conservatives.  The Blair years, whilst extremely successful for many, did not do anything for minorities, disabled people, or many of those stuck in poverty, and was a supporter of the Iraq War with along with POTUS George W Bush.  He was not my Labour leader.

Corbyn could have been, but ultimately proved unsuccessful for myriad reasons.  So, onto Keir Starmer who, whilst more right-leaning than I would wish for, still might have been good.

I was also a member of Disability Labour.  I became the Disability Officer of my ward at their request and on the strict condition that it would become a shared post and I would be put in contact with those who identified as disabled within the ward so I could get a better idea of what was needed.  That never happened, although I was assured by the secretary the emails were sent (I never received one, which as a disabled member I should have done).  I explained what would be needed to ensure a person with disabilities could fulfil the role (minimum of two weeks’ notice of meetings, ample time to read documentation, accessible meeting sites, online access to watch meetings, online voting etc.) but never received any support or assistance nor contact from other disabled members (one of whom is a friend who never received an email) and in the end I resigned.  I was asked to remain in name only for a further five months which I agreed to.

Since this time, the position for disabled members has not improved, and the pandemic has thrown that into sharp relief.  At the moment Zoom meetings are allowed due to social distancing, which has increased access to so many disabled members, and it felt as if our contributions and requirements are actually being thought of for once.  We hoped, we believed, that it may continue after the pandemic ended.

But no, already the National Executive Committee has confirmed that the annual policy decision-making meetings cannot be attended virtually and that voting must be done in person.  Leadership elections are held online.  Disability Labour will keep fighting for true accessibility, but over my five years of membership I have seen no sign that disabled people are listened to, nor their needs considered.

Further, since the leak of the report into the systemic racism and antisemitism within the Labour Party last April (https://www.huffingtonpost.co.uk/entry/leaked-labour-report-sees-black-voters-quit-party-over-final-straw_uk_5ea70e55c5b6a30004e62cc0), MPs and more particularly the administrative staff employed by the Party, there has been no transparency or discussion about what is going to done about the racism.  There has been discussion about an investigation into how the report leaked.

I have written to my MP and to Keir Starmer several times since the report leaked and not received an acknowledgement of my enquiries let alone any form of answer.  I no longer expect to receive one; it’s been over two months now and I’m still waiting.

The pandemic has already affected my financial situation.  It only costs £5 per month to be a member, but I tend to vote with my money and fund causes I truly believe in.  Until the Party properly deals with its ableism, racism and antisemitism in the same way it tries to with homophobia and transphobia, I do not want to provide money to it.  I still support the Party and believe my MP, Vicky Foxcroft, is doing a very good job as Shadow Minister for Disabled people, but I cannot give money to a party that treats its own MPs and members of colour, religion and/or disability with such disregard.

The Labour Party talks the talk for the country in general, but if it won’t walk the walk internally I’m not sure I can trust it to do so for the UK.

On the other hand, the Conservative Party is far, far worse.  I’d rather have a choice between zenith and nadir, than the choice between the devil and the deep blue sea that we have.  I guess I’ll just have to put my swimming costume on and ignore the sewage in the water.